Blogging through Tears

I’m typing this at a 16 font – because I can’t see anything smaller through my tears. I write from a broken heart. I write of broken dreams, unmet expectations, pure frustration, and uncertainty of the future. I’m actually a little surprise how genuinely downcast I feel.

I chose to drop Rose from ballet. Not life changing – but for me it is.

ballet-8

She loves to dance. Since she was little she has put on a tutu and danced around the living room performing for anyone who was available. Heaven forbid you don’t clap after her 28th twirl – even if you clapped for the 27 prior ones. I knew she would love a dance class and performing on stage where hundreds of people were clapping for her.

Travis Academy of Fine Arts was the perfect fit for her. It’s focus is training artists to use their gifts and talents for the glory of God. The staff and the teacher were so accommodating, loving and supportive of her disabilities. It was perfect.

ballet-6

After the first two classes, she happily put on her ballet uniform at home after class and demonstrated her “happy toes, sad toes” (flex, point) and her  popcorn – “pop, pop, pop, explode” (releve, releve, releve, jump). We clapped.

The third week she was comfortable with the class. She made “friends.” But everything changed. The teacher had to send her out in the hall with me because she was invading her “friends’ personal space, and the other students were upset (a social clue she missed).  She was supposed to sit with me for a couple of minutes then go back to class. Instead she had an all out melt down – fell on the floor, kicking, screaming, sobbing – and it didn’t end. I picked her up, and took her to the car and drove home.

ballet-1Since then, every time ballet is mentioned – she becomes anxious – her entire body becomes tense, she contorts her face, and she rubs her fingers together until almost raw in obsessive, repetitive manner. Last night, as I put her to bed – I tried to reason with her that ballet class would go better this week, and she’d like it again – you know, “if you fall off the horse – get back on” – right? She started crying uncontrollably and gouging her arms with her finger nails. I simply held her and prevented her from hurting herself farther. I realized – getting back on the horse was not possible at this point in time. It may only take one good class to make her enjoy it again – but that one good class was not going to happen. She is incapable of bouncing back and having the “one good class.”

I dropped her from the class – and I cried the whole time I did so. It is about so much more than a ballet class. Enrolling her in the class had made me feel like a “good parent” – I was giving her a social outlet, I was building upon her interest – her gifts and talents. Enrolling her in the class had made me feel like she was a “typical” “normal” little girl – instead it opened my eyes that she is not “typical” or “normal.” I knew that in my head – but dropping ballet touched my heart – and I can’t seem to stop crying over it.

Ballet was my wake up call. At this point in life – Kymee doesn’t need her gifts, talents and interests encouraged as much as she needs skills to pursue her gifts, talents and interests. She needs social skills so she doesn’t “pop other people’s bubbles” (invade private space). She needs skills in dealing with change and transition (being sent out of class was an abrupt transition). She needs skills to manage her anxieties – so she’ll stop harming herself and start enjoying life. She needs therapy not ballet.

That’s a hard pill for this mom to swallow and I can’t stop crying I will reset the type to 12 now.

 

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Thanks, Evil Queen

The book, Healing Stories for Challenging Behaviour by Susan Perrow asks the question, “Could truths contained in the rich realm of story reach children more directly, and in a way more in tune with their innate imaginative capacities?” I can firmly say, “Yes!” – and sometimes itś from the least likely story and character!

kymee-6I do not fully understand how such a beautiful sweet little girl can struggle with such strong feelings of anxiety and insecurity. Rose has been adored and uplifted her entire life – by countless friends and family members who love her – she often complains that “no one loves her.” These feeling of being unlovable are exaggerated when those closest to her pay attention to anyone but her.

I told a little girl she had beautiful curly hair. Rose cried, “You don’t love me. You don’t think I’m beautiful.”

“You hate me – you are holding the baby and not me.”

“It is a horrible day – you love the dog more than me – he is always on your lap.”

I was singing praise and worship songs as I drove through traffic. Rose began screaming and crying uncontrollably. I finally got her to calm down enough to tell me what was wrong – “You love Jesus more than me!” she stated through her tears.

I am at a loss. I have no idea how to deal with this issue. I cannot reassure Rose of my love enough. I cannot stop loving others, complimenting others, or singing praises to God because of her insecurities.  I’ve been praying about how to deal with this egocentric need for love and affirmation.

Enter -stage left – Snow White’s stepmother – the Evil Queen.

stepmother-2

After a year had passed the King took to himself another wife. She was a beautiful woman, but proud and haughty, and she could not bear that anyone else should surpass her in beauty. She had a wonderful looking-glass, and when she stood in front of it and looked at herself in it, and said—

“Looking-glass, Looking-glass, on the wall,

Who in this land is the fairest of all?”

the looking-glass answered—

“Thou, O Queen, art the fairest of all!”

Then she was satisfied, for she knew that the looking-glass spoke the truth.

But Snow-white was growing up, and grew more and more beautiful; and when she was seven years old she was as beautiful as the day, and more beautiful than the Queen herself. And once when the Queen asked her looking-glass —

“Looking-glass, Looking-glass, on the wall,

Who in this land is the fairest of all?”

it answered—

“Thou art fairer than all who are here, Lady Queen.”

But more beautiful still is Snow-white, as I ween.”

Then the Queen was shocked, and turned yellow and green with envy. From that hour, whenever she looked at Snow-white, her heart heaved in her breast, she hated the girl so much.

Little SnowWhite from Grimm’s Household Tales by Margaret Hunt

Rose’s eyes opened wide – “That’s not nice. She’s not nice.” Then she began to cry – not her uncontrollable meltdown sobs – but a watering trickle that brightening her already blue eyes. “I don’t want to be like her.”

I had expected Rose to relate to Snow White – beautiful, kindhearted, helpful – because that is how I see her. Instead, she was confronted with the self she struggles with.  Since the first step in changing is realizing and admitting you have a problem – I see her self-reflection as a huge breakthrough.

stepmother-1

Tomorrow, I’ll pray where to go from here, but today – I am thanking God for the Evil Queen.

Tortoise Brain or Hare Brain?

brain running

Doctor’s Illustration of Rose’s Brain

Explaining to a five year old why their brain doesn’t work quit right is a challenge. The psychiatrist gave it his best shot, “There is this little man in this part of your brain (He points to a picture of the brain and the part that controls impulses and self-regulation). He runs really, really fast. Then there is this guy (he points to the picture of the stick figure standing in the thinking part of the brain). He doesn’t move as fast. We want to play a game to stop this guy (the impulsive one) and speed up this guy (the thinking one) so that he (the thinking one) wins the race.”

hare 1

My first thought – Rose’s brain is The Tortoise and the Hare. How can I use the story to help her in her therapy?

I love, love, love the book “Healing Stories for Challenging Behaviors.” (Did I mention I love this book?) The book asks the question, “Could truths contained in the rich realm of story reach children more directly, and in a way more in tune with their innate imaginative capacities?”  Later in the book, Susan Perrow answers this question by writing, “All stories have therapeutic or healing potential. If a story makes people laugh, the laughter can be healing. If a story makes them cry, this can be healing too. Folk and fairy tales, through their universal themes and resolutions, have healing possibilities. They can offer hope and courage to face the trial of life and help the listener find ways to move forward…But over and above the healing potential of all stories, specific stories can help or heal specific situations…When (we) use a healing story with children, the story has the potential to bring the behavior or situation back into balance.”

Perrow’s advice for writing or rewriting classic stories for a specific child’s needs:

  1. Focus on specific behavior (“throws a toy” not “acts out violently”)
  2. Use Repetition, rhythm and rhyme (these stick in the mind)
  3. Have a happy and hope-filled ending

I decided to write a “healing” story to help with the process. Here is my humble attempt:

hare 3

Once upon a time there was a hare. He was very bouncy, and jumped around aimlessly. He moved so fast, he never stopped to think about where he was going or what he was doing.

In the same meadow, lived a tortoise. As everyone knows, tortoises are very slow. What they may not know is that tortoises are also very wise. The reason they are slow is because they think about every step they take.

One day the tortoise said to the hare,

“Run a race – if you dare.

The race is won by the one with care.”

“I am so much faster than the tortoise and I so like to win.” thought the Hare.

The tortoise repeated,

“Run a race – if you dare.

The race is won by the one with care.”

So the race began. The tortoise thought about where he was going and began moving. He did not move fast, but he kept his eye on the finish line and kept moving forward – thinking about each step as he went. As he strode along, the tortoise kept repeating,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare knew he would win – and he had a little time to spare – so he jumped and hopped and spun around in circles. The hare accidentally kicked a rock and stubbed his toe. It hurt, but he could still hop on one foot faster than the tortoise could walk.

All of the sudden the tortoise passed the hare – still saying,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare became really angry when he saw the tortoise passing and instead of hopping faster towards the finish line, he kicked a tree with his good foot. “OWWW” yelled the hare.

Just then the tortoise crossed the finish line and said,

 “Run a race – if you dare.

The race is won by the one with care.”

The hare was sad that he had not stopped and thought about how to win the race like the tortoise did – but the wise tortoise promised to help him STOP, THINK, and 

 “Run a race – if you dare.

The race is won by the one with care.”

BRAIN T & H

My Illustration of Rose’s Brain

Challenges of an Unknown Syndrome

Kymee's Turning OneAt three months, Rose was diagnosed with Fetal Valproate Syndrome by a geneticist. That geneticist is the only doctor’s she’s ever had who knew what the diagnosis was without looking it up on google. If the doctors we deal with on a regular basis don’t know what it is – you can bet friends, family, babysitters, teachers, and random people who see her at the park or store have never heard of it.Kymee's Turning OneFetal Valproate Syndrome is a disorder caused by exposure in the womb to certain prescription drugs. For Rose, the symptoms included cleft lip and palate, a hole in her heart, specific facial and body features, and sticky ear – sometimes causing hearing loss. As she grows older, we are encountering both learning challenges and behavioral issues.d49c7-grandmaThere are many challenges with parenting a child with an “unknown” syndrome. There is next to no research and studies done on it. Little information is found through google. There are no other parents around whose kid has the same thing and I can compare notes. The lack of information available makes me as a parent questions everything I do – “Is this behavior because of the syndrome or am I doing something wrong in disciplining?” “Is this naughty behavior, or unavoidable behavior?” Another frustration is the inability to streamline all of her treatments and therapies. The Genetic and Rare Disease Information Center says this about treatment, “Currently there are no specific treatments for fetal valproate syndrome. Each symptom or birth defect associated with fetal valproate syndrome are managed individually, and may require a team of specialist.” The team thing never happens – it just means I have to go through a ridiculous intake program every time Rose sees a new doctor or therapist. This is time consuming and inefficient.3e604-12-may3So, what can you, the reader do?

  1. Be kind. Have empathy. If you see a kid having a melt down at the store don’t automatically assume the kid is a brat in need of better parents. Mom is frustrated – she doesn’t need your judgmental look or underhanded comment. You don’t know what that family is facing – so just be nice.
  2. Be informed. If someone with an “unknown syndrome” is in your acquaintance – find out about it – to the best of your ability.
  3. Don’t compare. My child is not like other kids her age. She is not like kids with other syndromes. She is not defined by her syndrome alone. She is beautiful and she has some challenging behaviors. She is herself – period. Let’s celebrate her growth – at whatever speed it is, and work on her challenges – without comparing them to others.
  4. Listen. I need a listening ear. I get frustrated and sometimes just need to talk about it.
  5. Ask.Don’t be afraid to ask, “How can I help you?”
  6. Do respite care. I trust few people with the care of my daughter – I trusted even less when she was smaller. If you are in the “trusted few” – I need you. I need you because somedays I need to get away or I am going to go mad. If you aren’t in the “trusted few” – spend some time with me and my daughter and become one of the few. My few are getting burnt out too, and I need you.
  7. Be patient with me when I am having a bad day. It probably isn’t directed at you – but at the frustrations of dealing with my child’s behavior, or the countless calls and visits I make to doctors and therapists.

Kymee 1

I remind myself often of the question the social worker asked us before we adopted Rose. “How do you feel about the possibility that she may have disabilities?” I responded, “God has given her everything she needs to accomplish everything He has set out for her to do.” Our job is to stay close to Him allowing him to direct us as we navigate this unknown syndrome – because it is not unknown to Him.

 

 

 

 

 

Take it from Herb: Have Patience

My older kids HATE the Herbert the Snail song which I would sing to them when they were impatient – “Have Patience. Have Patience. Don’t be in such a hurry …” Now I’m singing it to myself.

After reading and watching Helle Heckmann’s work, “Chidhood’s Garden” I was convicted to slow down my life, I just didn’t realize how frustrating it would be.

We go through our morning routine – personal devotions (thank God I didn’t forget this one today!) , breakfast, dishes, chores …

“Time to play outside Rose. Would you like to go to the park today?”

“Yeah!”

“What do you need to do before we can leave?”

“Put my puzzle away. Get dressed.”

Patience 1I’m thinking ten, fifteen minutes max – think again.

Three out of five of my children would throw the block puzzle pieces into the toy box – never to be found again. If I was lucky, one of my five would have put the blocks back in the original case haphazardly and put the case away. Then there’s Rose …

She has to put the puzzle together inside the case.

5 minutes later, she’s done. Or not …

She has done the puzzle – cow picture up – on the window of the case, so when she shuts the case and looks through the window the tractor picture and not the cow picture is showing through the window.

Therefore, she must redo the puzzle.

She dumps it out.

She thinks it through and realizes she must put together the puzzle on the opposite side of the case – away from the window.

10 minutes later (between the thinking and redoing the puzzle) .. she’s done.

Or not … When she closes the case, holds it by it’s handle, and looks through the window.

Sure enough, the cow picture is showing … but it is upside-down!

Patience 5

She opens the case and dumps it.

She sits and stares at it.

10 minutes later, she asks how to do it – No kidding she stared at it for almost 10 minutes without saying a word!

I take a deep breath and tell her – when really I wanted to throw the puzzle pieces into the toy box abyss.

She proudly completes the puzzle so that the cow picture is correctly seen through the case window.

Patience 3

Patience 6

Now time to get dressed.

She picks her clothes and lays them out to look at them (is this normal?).

She decides she wants two pig-tails, so grabs the pack of rubber bands.

Patience 2

Unfortunately there are five colors left on the scrunci pack.

She methodically takes two rubber yellow rubber bands off the pack and lays it on top of her shirt and stands back and looks a while.

She places the yellow bands back on the cardboard holder, and takes two orange off, lays them on her shirt, stands back, contemplates.

Returns the orange and slides the pink off – does the same.

Exchanges pink for red – same old, same old. Puts red back and tries out purple. She finally decides on one yellow and one purple.

This whole process took 20 minutes of my life! I have to admit I sat and watched and was somehow mesmerized by the entire process.

If you’ve been figuring … that’s 45 minutes to put one puzzle away and get dressed before we can head to the park.

I’ve been learning:

  • to sit on my hands – instead of jumping in and doing it myself
  • to bite my tongue – instead of scolding, rushing, or nagging
  • to observe – not instruct
  • to appreciate how God made her – much more meticulous than myself
  • to have patience – we really didn’t need to get to the park at a given time

I also realize that the process she took to get ready taught her valuable lessons …

  • critical thinking and problem solving as she figured out how to put the puzzle in the way she wanted it to go
  • Creativity and self expression in choosing clothes – and Scruncis
  • Self -confidence in being able to do it herself at her own speed

Maybe it was 45 minutes well spent. Maybe I will someday learn to enjoy this slower pace , for now I have Herb in my head singing,  “Have Patience. Have Patience. Don’t be in such a hurry …”

The Only Thing to Fear is …

The only thing to fear is fear itself … or balloons, or rubber duckies, or sponges, or colored noodles, or nail polish, or bubbles …


The first time we saw it, we laughed. It was Kymee’s first birthday, and I was blowing up balloons – she shrieked in horror and ran away. Call me cruel, but I laughed when she ran as fast as she could away from the balloons and stared at them as if they may attack her at any moment.

She had a rubber duckie birthday party, so I was surprised a month later when I got a cute rubber duckie with a boa and princess crown for her and instead of squealing with delight she ran the other direction crying. The duckie sat in the middle of the living room and Kymee  never took her eyes off the duckie as she skirted the edges of the wall to navigate her way around it.

Then there was the time I picked up a packet of the sponge animals that grow in water. “Won’t Kymee love these,” I thought. Andres put them in water and as they grew Kymee’s eyes grew too and became cloudy. She began screaming, and ran into my arms to save her. Andres picked one up and said, “See, it won’t hurt you.” She squeezed my neck tighter and buried her head in my chest. Andres placed the sponges on the border of his bedroom door and Kymee would not even think twice about entering his room. Smart boy.

We never know what will trigger her fear. This week we’ve experience three phobia triggers. That’s a lot for a week.


We had a family Valentines Party. I made a sensory box for the toddlers. I colored spaghetti noodles with red food coloring added a few pink and red toys, spoons and measuring cups. The boys loved it. Kymee touched it and ran away shaking her head. She wouldn’t come into the kitchen until I removed the sensory box.

Kymee brought me nail polish, which in the past she has been fearful of. I was surprised when she indicated she wanted me to put it on her. She sat perfectly still as I painted one set of toenails green and the other five piggies blue. I told her to sit still as they dried. She giggled as I blew on her toes. Mission accomplished. I sat her on her feet on the floor at which moment she looked at her toes and started screaming. I should have been filming for “America’s Funniest Videos” as Kymee proceeded to kick her feet trying to fling the color off her toes. She stomped and tried to brush the color off with her hands all while screaming at the top of her lungs. If you have ever seen someone try to sling their toes away from themselves, you have to admit it is worth the $100,000 grand prize.

Kymee loves bath time, so I made a special Valentines Bath. Pink food coloring, bubble bath, foam hearts and silk rose peddles were added to the tub along with bathtub paints. I put Kymee in the tub. She froze. Fear creeped into her eyes, and she started crying. Why? She’s played with paint in the tub. She’s had colored water. She loves playing with the foam shapes. I picked up some bubbles in my hands, she cried more. The bubbles. She’s scared of the bubbles.

At face value, each incident is funny. It’s funny to be frightened by such trivial things, isn’t it? We’ve all laughed at the absurdity. But who wants their little girl to be frightened of the world? It is a mom’s job to protect their child and make her feel secure. I fail time, and time again. It is impossible to avoid an unknown trigger.

I’m going to get technical on you now – hang tight.

I remember when Kymee was little and having screaming fits (which she still has – less often but more violent). Her geneticist told me it was possible that the part of her brain that allows her to self-regulate, may not have developed properly in vitro. This week I was reading a book on how children’s brains developed (that’s what the nerdy me does for fun) – and it clicked.

The book explained that if the mother is anxiety-ridden or in great stress while pregnant, her body sends out stress hormones and set patterns for her developing fetus’s brain “that ‘wire’ the unborn child for this automatic defense response diminishing the functioning of the high brain … (The brain in the unborn child than is geared towards) protection and defense, rather than being free to move toward intellectual curiosity and exploration”(Oppenheimer). Since Kymee’s mom was bipolar, and was prone to outburst of rage, is it possible that Kymee’s brain is wired for defensiveness – she sees things differently than I do? – No specialist’s evaluation, just a mom in deep thought.

The geneticist says that after Kymee turns three she can send her to behavior specialists who can help us teach Kymee to deal with some of her issues. I hope the fears are a part of that. It’s unthinkable to have her go through life with possible fears creeping around every corner.

Since Princess Kymee can not fight the fear dragon herself, it’s up to me, her mom to be her knight in shining armor and fight the demons for her. So I’ll duel with balloons, banish over-dressed duckies,  exterminate sponges, discard colored noodles, cover piggies with socks, and scoop bath bubbles from the tub into the toilet (does this double as cleaning the toilet?).

So Princess Kymee can play unfearfully ever after.

4 Days/3 Nights at Cooks

Scheduled Surgery
Dr Obaid office called and said Doc would be out of town on 13th so rescheduled for April 27th, 9:00 am

April 26th

Cook Children’s called and said surgery rescheduled for 2:00 pm
Kymee could eat baby food or have formula until 6:40 am on the 4/26
She could drink clear liquid until 10:40 am
We needed to be at the hospital at 12:40 pm for check-in and pre-op





April 27th
Woke Kymee and made her eat – oatmeal mixed with formula & applesauce



Kymee refused to drink the clear liquid – we tried both coconut water & apple juice, she had about ½ oz


Arrive at hospital (really it was closer to 12:50 – which I needlessly worried about)
With Mom, Dad, Emylee, and Grandma

Checked into hospital



Reported to Pre-op for vital signs & countless questions asked over and over again by every person who saw Kymee (don’t you think maybe the nursing staff should talk to the anesthesiologist and the surgery staff so they don’t have to keep repeating the same questions?)
Were told by the nursing staff that Dr Obaid had arrived at the hospital an hour and a half late so our new scheduled time of surgery was 3:30 pm.






We were informed on the procedure of surgery:
1) I would hold Kymee as the sprayed “kiddy valium” up her nose – this would prevent “Mommy separation anxiety” – and she would not remember anything. I ask if I could get some too.
2) They would wheel Kymee back to surgery, she could bring comfort items with her. We chose her wubby, a silky blanket which she loves the texture, and her stuffed bunny.
3) The anesthesiologist would place a face mask on her which would knock her out. I got to choose the flavor: cotton candy. Emylee said this was cruel, because she would grow up with a subconscious aversion to cotton candy – a cruel fate to live with.
3) They would administer an IV after she was already out – so she would not feel a thing.
4) The surgery would take around 2 ½ hours
5) After surgery, she’d be in recovery room than moved to a private room where we could be with her, and if all went well, we’d be going home in 24 hours.

I asked if Kymee could have a vanilla flavored pacifier since she hadn’t eaten since 6 am. The answer, “No, it’s just unfair to the child to give them a pacifier when they won’t be able to suck after the surgery.” My reponse, “And it is somehow fair that my child hasn’t eaten for 8 hours, and we have nothing to keep her happy?” “Sorry.” the nurse replied, “That’s the rules.”

Aunt Kim arrived. We were sent to the ‘play room” to await surgery. We waited. And waited. And waited. 2:00 the original time came and went, so did 3:30. We continued to wait.


The nurses informed us Dr. Obaid was stuck in surgery and it would be a couple more hours. Poor Kymee and her tummy. Surprisingly enough, she was happy and played – and showed very few signs of being hungry, which is very rare for her. We chalked it up to answered prayer. I knew one friend was fasting and praying for her all day, many posted prayers on Nelson and my facebook, our church was lifting her up to God, and our whole speech and debate team was praying for her as they prepared and competed in the Regional Tournament.


Nelson, Emylee and I hadn’t eaten, so we left Aunt Kim and Grandma to watch Kymee and we headed to the cafeteria. When we returned Kymee was asleep in Aunt Kim’s arms.

The anesthesiologist consulted with us and told us he would talk to Dr. Obaid and see if we could give Kymee clear liquid while we waited. He returned to give us a choice. “We can give her clear liquid, but she have anesthesia until 2 hours after consumption. Dr. Obaid believes that the surgery he is in is not going to last the full 2 hours, so if he gets done and Kymee is not ready to go under anesthesia he will bump the patient after her into her spot and she will have to wait til he is done with another surgery. So, we can give it to her and take the chance, or you can hope she gets into surgery before the 2 hours. What would you like to do?” Kymee was surprisingly happy. We said no liquid, we want the next surgery spot. WRONG CHOICE – Kymee was not wheeled into surgery for another 2 hours and 30 minutes.





























When they said they were ready to take Kymee, we circled around her, laid hands on her and prayed. I couldn’t pray out load – because the tears were choking me. The nurse gave Kymee the “baby Valium” arranged her on the surgery bed along with her wubby, bunny and blanket; I kissed her; and at 5:10 they wheeled her away.






The family relocated to the waiting room, which was pretty much empty. Stephan arrived with Taco Bell and a hug. Uncle Mark arrived with more hugs. Nelson changed the channel in the waiting room from the “Royal Wedding of WIll & Kate” to the “Texas Rangers.”

About an hour into surgery the phone rang, Emylee answered and handed it to me. The surgical nurse was letting us know everything was going as planned and they were slightly ahead of schedule.

Two hours after they’d wheeled Kymee away, Dr. Obaid arrived dressed in his scrubs. “Everything went perfectly. No problems. We’ll be moving her to recovery in a few minutes, then in about an hour, she’ll be moved to a room where you can join her.”
We all sighed a breath of relief and praised God.

About 20 minutes later, Dr. Obaid returned and said, “We removed Kymee’s breathing tube. She didn’t like that too much, so we put it back. (What do you think he really meant with those words?) I am transferring her over to ICU for the night. You can move over to the ICU waiting room and they’ll tell you when you can go in to see her. It may be a while, so now might be a great time to grab a bite to eat or a coffee.”

Grandma decided the day had been long enough – so Stephan took her home. Mark and Kim stayed with our stuff, and Emylee, Nelson and I headed to Starbucks – just in the nick of time. They were giving their “last drink” call.

The ICU waiting room was packed – hardly a spot available. More “Prince William Royal Wedding” previews on the TV. They finally called us back – only Nelson and I to start with, then we could have no more than 4 by the bed at any time.

The ICU consists of a row of “rooms” divided by curtains. Their were a few glass front rooms where children with contagious disease were kept. It was a sad and daunting place. We were ushered to bed 14 – the corner room.





I had lost all track of time by now – I just wanted to see and hold my baby. Seeing – Yes. Holding – No. She had so many tubes and wires it was hard to see any skin on her tiny body. She was completely drugged out.

The Nurse told us that whenever she wakes up she fights the machines and tries to pull the breathing tube out. The ICU team had already re-intubated her once. So the goal was to keep her as drugged as possible with morphine and some other pain killer I can’t pronounce, so that she would not move or wake up. We were NOT to stimulate her or talk to her. We were also told we were not allowed to get naked behind the ICU curtain – Seriously??


We brought Mark and Kim into the curtained off room with us, just then Kyme began to stir. She thrashed on the bed – I grabbed one side of her and the nurse the other. We held her down as blood squirted out her mouth and nose and she fought us holding her down. She may not quite be 18 pounds, but she is a strong little girl! The nurse upped her morphine until she settled down.

Mark, Kim and Nelson left to go have a stiff drink – while Emylee and I settled in for the night.

April 28th
A couple more times Kymee began fighting and I helped the nurse hold her down. Every time she began fighting, she lost more blood – the nurse was starting to get worried that she couldn’t stop the blood flow. Around 2am the nurse called Dr. Obaid. Her gave her a surgical trick to stop bleeding, that she had never used before. Soak gaze in saline and some sort of prescription and place in her mouth. The pharmacy was called to make up the concoction.




Meanwhile the head ICU doctor on-call was called in because Kymee wouldn’t stop thrashing and pulling out her ventilator. He suggested it may be placed too far down her throat and that was why it was bothering her.


Around 3am, the ICU doctor, 2 nurses and the respiratory technician stood around Kymee’s crib and Emylee and I looked on. They slowing pulled Kymee’s respirator out mm by mm. She stirred, and continued to bleed harder. They retaped the breathing devise to her little face and stuffed her mouth with soaked gaze strips. They upped her morphine. She stopped breathing completely on her own – the machine took over. This was probably the scariest moment of my life. After a few minutes, the bleeding stopped, but she was still unable to breath on her own.


Kymee was to drugged to move, let alone pull her breathing tube out any more. She looked peaceful. I did not feel peaceful.



Around 6am, Dr. Obaid called for a status update. He told the nurse that she needed to take down the pain meds, or Kymee would not be able to breath herself. And after taking down the meds, they could begin weening her from the ventilator.

7:00 came a shift change – the night nurse had sat by Kymee’s bed all night, holding her whenever she thrashed.


Around 8 am, Dr. Obaid arrived. He stood next to Kymee in his suit, along with the ICU doctor, two nurses, the respiratory technician all in scrubs. Dr. Obaid assured us everything would be ok – but the look on his face said otherwise. I could see the worry in his eyes as the removed the breathing tube, and the day nurse had tears streaming down her face, and Kymee took her sweet time taking a breath, and then she cried. Dr. Obaid smiled and said, “That is the sweetest sound I’ve heard all day, if she can cry she can breath.”


It was the first time we had heard her cry, and it was a funny sound. It sounded almost like a newborn, not a 10 month old baby. Before the surgery she had had an open “Ahhhh” sound to her cry, now with a palate between her nose and mouth, the sound was small and hallow.


They replaced the ventilator with a nose tube which delivered oxygen and a prescription to open up her air passageway.

You could see Kymee improving all day by leaps and bounds. We were now allowed to hold her, and she responded to us as best she could. She was on heavy pain meds, but not comatosed with them as before. She still wasn’t eating at all by mouth, so there was no chance of her going home.









Dr. Obaid ordered another night in ICU.


April 29th

In the middle of the night she began running a fever, far above what she should. Our night nurse had returned, and she let me hold her as she stripped her and gave her a cold sponge bath, trying to bring down her temperature. Her fever broke after about and hour, but it would still spike every so often throughout the night. In the morning in broke for good. I however caught the chills, and just couldn’t get warm no matter what I did.


A family in church had provided us food – lots of
it. We ate in the ICU waiting room and shared our dinner with a couple of families there. One told us they had been living in the ICU waiting room for 3 months while their son had had 3 heart surgeries. This is the first home cooked meal they’d had in all that time. God multiplied the loaves and fishes and blessed so many with a simple meal.

In the evening, we were moved to a private room, where the nurses only check vitals and give pain medicine every 4 hours. So, we were able to get a little sleep. Kim switched places with Emylee and joined me on night shift.


April 30th

One by one the strings and tubes attached to Kymee had been removed, the glow-in-the-dark toe and the IV port disappeared last,


We sang along with Kymee:

“I’ve got no strings

To hold me down

To make me fret, or make me frown

I had strings

But now I’m free

There are no strings on me”


After 4 worry-full days and 3 sleepless nights, I was ready for a new challenge – caring for a recovering baby from the comforts of home, surrounded by my loving family and friends and an ever attentive barking hound dog.

What are they doing to Kymee?

This doll has a cleft lip and No-Nos -how cute is that!
At our Pre-op with Dr. Obaid, he clearly explained what he would be doing to repair Kymee’s cleft palate. I am still wondering whether I wanted, or want to know the information. Dr. Obaid was professional and matter of fact – and I smiled as I listened – then walked to the car and shock set in.
“Did he just say what I thought he said?” I asked Emylee.
We sat in the car, laughing and making jokes at what is not funny at all. Our warped way of dealing with the stress.
So what is Dr. Obaid going to do to “fix” Kymee’s cleft?
He will cut around the gums, by the bone,
and pull the palate together to meet in the middle
He will then stitch the two sides together to create a palate. The sides will be left open. Skin will grow where there is a bone, so the sides will eventually close up where the middle will not naturally close. The surgery itself with take approximately 2 1/2 hours.

He said he would be putting a suture in Kymee’s tongue and then taping the string to her cheek for a day or two. It would look like “he had not quite finished surgery.” Then in his words, “We could pull the string if Kymee stops breathing.”
Emylee suggested making a shirt for Kymee which reads, “In case of emergency, pull string.”
(This picture is the least horrifying one I could find on line)
I’m not sure which scares me the most – the fact that she might stop breathing – and I would have to DO something, or the fact that her tongue will be tied down.
So, being the people that we are, Emylee and I both went home and researched this “tongue thing.” What we found is that is is preventative treatment. One of the challenges of Cleft Palate Repair Surgery is that the tongue will snag on the sutures, hurt it, and the baby can swallow her tongue and choke. Stitching the tongue down prevents this.
Kymee will get her tongue pierced before Mandy – image that!
Then Dr. Obaid said we may be able to take her home in 24 hour! SERIOUSLY??? I don’t want to take her home if there is any chance that I have to “pull the string!” We can take her home as soon as she is eating on her own. Let’s keep the food and pain meds coming through an IV – for Kymee and me!

After surgery, Kymee will eat from a 1/2 oz syringe for 3 weeks. Then she can go to her cup but no bottle.


She will wear “No-Nos” for around 6 weeks so that she can’t touch her mouth or put anything in it.

(Here is a picture of Kymee with No-Nos on from her first surgery. Because she always scratched her face with the No-Nos, Emylee suggested that I put leg warmers over them. I’ll do the same this time.)



I know countless children have had this surgery – but they were’t my kid. I won’t lie – I’m nervous and scared. I’m excited for her to get it done and over with, but it doesn’t make me worry any less.

I take comfort in knowing God is in control. He gave Kymee to us, and He will give us courage and wisdom to care for her needs.
Psalms 55: 22 gives me comfort.
Cast All Your Anxiety






Nurture over Nature

“Kymee has the predisposition to be “slow” because of her biological background.” the caseworker informed us.
“Then again,” she stated, “it may just be environmental, and changing her environme
nt may make the difference.”

Nurture over Nature
So our goal is to expose her to “whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anyt
hing is excellent or praiseworthy—think about such things.” Phil. 4:8

All things bright and beautiful,

All creatures great and small,
All things wise and wonderful:
The Lord God made them all.


Beautiful Sounds
Kymee attended the Myerson Symphany for the first time at 5 mouths of age.
And at 6 months we went to the Musical Instrument Museum in Phoenix. She loved listening to drum beats from around the world.

After previewing every classical CD on the shelf, Andres bought her this for Christmas.
Classic Baby: Beethoven

I read poetry to her every day – I love beautiful words, as I hope someday she will too. My current favorite is William Blake’s “Songs of Innocence”

A CRADLE SONG

Sweet dreams, form a shade
O’er my lovely infant’s head!
Sweet dreams of pleasant streams
By happy, silent, moony beams!

Sweet Sleep, with soft down
Weave thy brows an infant crown!
Sweet Sleep, an
gel mild,
Hover o’er my happy child!

Sweet smiles, in the night
Hover over my delight!
Sweet smiles, mother’s smiles,
All the livelong night beguiles.

Sweet moans, dovelike sighs,
Chase not slumber from t
hy eyes!
Sweet moans, sweeter smiles,
All the dovelike moans beguiles.

Sleep, sleep, happy child!
All creation slept and smiled.
Sleep, sleep, happy sleep,
While o’er thee thy mother weep.

Sweet babe, in thy face
Holy image I can trace;
Sweet babe, once like thee
Thy Maker lay, and wept for me:

Wept for me, for thee, for a
ll,
When He was an infant small.
Thou His image ever see,
Heavenly face that smiles on thee!

Smiles on thee, on me, on all,
Who became an infant small;
Infant smiles are His own smiles;
Heaven and earth to peace beguiles.
Beautiful Art
Kymee has already enjoyed the Dallas Museum of Art

And her favorite book is “Art for Babies” – all black and white pictures done by famous artists.

Art for Baby
She’ll just stare at the pictures

Beautiful Smells
I love pure essential oils.
Kymee’s favorites: Peppermint, Lavender, and Eucalyptus
No Picture Available
SCRATCH
AND
SNIFF

The social worker asked, “So how do you feel about the possiblity of Kymee being slow?”
My response, “God has a very special plan for her, and he has given her every her everything she needs to accomplish that purpose.”
My job is to expose her to the best, love and nurture her, and teach her to fulfill her purpose for the glory of God.

He gave us eyes to see them,
And lips that we might tell
How great is God Almighty,
Who has made all things well.
Cecil F. Alexander